Bayside woman smiles through fight against ALS

Posted at 10:18 AM, Jun 28, 2016
and last updated 2016-06-28 11:49:02-04

BAYSIDE, Wis. -- When you walk into Clara Johnson’s Bayside home, it is difficult to see at first. A big breathing apparatus hides Clara’s infectious smile.

That smile stays there, peering out beneath the plastic tubes even as she talks about ALS, also known as Lou Gehrig's disease, the neurological disorder that seems determined to take her life. Clara talks candidly about the way she reacted to that grim diagnosis roughly five years ago.

“My entire insides went, ‘you gotta be kidding,’” she recalled as she sat in her comfortable living room. “Because I had been planning. As soon as I retired, I was going to get on the next plane to Africa.”

After that difficult diagnosis, the news was all bad. Neurologists informed Clara that ALS would take her mobility, her ability to eat, and ultimately her life. That was a decidedly difficult pill to swallow for a woman who had once climbed mountains and had served more than three decades in the U.S. Forestry Service. Clara was the quintessential outdoors enthusiast.

“And I think you work yourself to a point where you start thinking about being depressed,” she recalled of the dark days immediately following the diagnosis. “I think that I was about to go in that direction.”

Johnson, though, chose another direction. Instead of wallowing in despair, she began to write a book, “Mom You Peed On My Foot.”

That book focused on staying positive in the face of an awful diagnosis. The book got rave reviews when it became available on She also became an active advocate for those diagnosed with ALS, forming a team for the annual ALS Walk.

Her team became one of the nation’s top ALS fundraisers last year. Clara attributes her strength to faith. Still, she concedes that she questioned God in the immediate hours following her diagnosis.

“How dare you do this to me,” she said as the nearly permanent smile disappeared. “Haven’t I done everything that you asked me to do? Come on, work with me! Talk to me!,” she recalled her initial thought patterns. “You always feel like you’re out there just talking to yourself until you stop and realize that the Lord resides within you.”

It has been nearly two years since doctors told Clara her breathing had diminished to a mere 21 percent of what it once was. She hasn’t been back to see those doctors since. Instead, she is planning for the upcoming ALS walk in October.